Life in the strange lane.

I am still waiting for the results of my LP, MRI and what seemed like 8000 blood tests that were all done at Addenbrookes on 17th march.
I usually see a neuro at my more local hospital,so I rang there again today to see what was going on.
The neurology department haven't even bothered turning off their answerphone today!
So I took things into my own hands,I rang Addenbrookes where the tests were done,they sent the test results to my local hospital on 12th April and cannot give me the results over the phone,but the really lovely lady I spoke to is going to fax the results to my GP ,I am then seeing a doctor on Friday.........not my usual GP she is on maternity leave(I am doomed,my life is never simple)
Now you may think I am kicking up a lot of fuss,but things don't seem to move along unless I kick them :-)
The reason behind all this is my beautiful  grandson,I just want to be sure I don't have a leukodystrophy that could kick in and affect him badly.I am sure you have all heard of Lorenzo's oil and therefore adrenoleukodystrophy.
As it stands I still think I have MS albeit an unusual presentation or I have conversion/functional/software disorder.
I swear I have probably read more neurology books,papers and ideas than some neurologists have.
Things are moving along on daughter off to Australia area too,I now have her two moggies in residence and they are being fairly good,although Claude, the small village idiot version of a cat, just cannot work out a catflap so, is having to have a litter tray for now,much to my disgust.
Sarah is doing her rounds of goodbyes and doesn't yet know we are springing a big get together on her on Sunday ahead of her leaving the following weekend.
I am to become redundant as of 21st of this month,I rang the social who tell me I can apply after the 16th.
It is quite frightening to think that if my health doesn't improve I may never be offered work again.
Sid my oldest ex battery hen is really showing signs of slowing down now,I expect she won't quite make the second anniversary of her release on the 16th May.

I am a slacker.

I really do mean to blog more often,honest guv.
Trouble is I rarely feel up to the brain effort involved.
So here we go on a massive catch up.
Daughter Sarah whose new baby died last year has now broken up with her partner and has decided she needs a break and time away,we have all encouraged her to such an extent that she is selling up and going to Australia on a working visa for a year.It will be absolutely the thing for her.Unfortunately guess who gets to foster her two cats for a year? yup as of the 22nd of April I will have my one evil moggy and her two in residence.
I went for my day on the the neurology ward at Addenbrookes hospital,they obviously have a different meaning for the word day .......I was there by 7.30 having an MRI before 8am and had had my lumbar puncture and 17 blood tests and was on my way home by 10.30 am.Why the letter said anything about a doctor  I don't know ,I didn't even see a passing neurologist,I did however see the nurse practitioner who told me I was walking badly(I thought I was having a good day)took my bloods,she seemed very nice except she managed to avoid telling me what my blood tests were for no matter how often I asked,I found this quite belittling to be honest.Still the reading matter was entertaining in the waiting room.Yes this is a photo of the available selection !I won't get any test results for at least another week,I am just dreading the thought I may have something hereditary that I may have passed to the kids and grandkids.

A week or so ago I had an incident with my bicycle,the chain snapped,got caught in the wheel and the bike immediately threw me in a hedge,I looked around and saw no one was looking(phew) then spent ten minutes trying to disentangle disobedient legs from the bike,the poor thing is so worn out that replacing the chain makes no sense as the gears and brakes etc are all shot,it is going to be cheaper to buy a new one.This incident got me in quite a tizzy though as I cannot walk far enough to get to work I have a borrowed friends daughters bike(bicycle Chinese whispers there) for the minute.
I have just found out I am losing my job at the end of May(not related to neurological issues) The boss has said that as I will probably only get a weeks redundancy pay would it be worth her getting rid of me ostensibly for health reasons,I am not very brave and told her today that I would prefer the legitimate route and will fight it out with the benefits system when the time comes.
Bruce my tiny light Sussex bantam hen sadly died yesterday,she went to sleep and didn't wake up,she had a good life though,almost fourteen years of free roaming and meal-worms,if only all hennies could have it that easy.
Today it was brought home to me just how badly I walk,there was something of a head wind as I was cycling home from work,so I got off and started walking,doing my usual and using the bike as somewhat of a walking aide.A chap stopped his car and came up to me and said"are you alright dear? do you need me to push the bicycle anywhere for you" I thanked him for his kindness and explained that I didn't need any help.
The funny thing is I can walk perfectly normally if I am walking backwards,just shows that it is the wiring not the legs that are broken.



Pictures stolen from here http://www.berryreview.com/2008/04/25/new-blackberry-line-running-late/
and here http://www.partydelights.co.uk/themes/australia-day-decorations.aspx

Neurology ...

My neurology appointment was brought forward to yesterday based on my clinical need.
I want firstly to say ' sorry' to my doc, It seems I was expected to be better by now and for this to be declared a post viral thing,but sadly not, she has narrowed down diagnosis based on symptoms  to three possible conditions,
Hereditary spastic paraplegia   Rare about 3 in 100,000
Adrenoleukodystrophy  Ridiculously rare,even more so in women,if I have this it is a very mild version of the 'Lorenzo's oil' illness.
primary prgressive multiple sclerosis  Most likely out of the three known options.
I have to go to the neurology day unit at Addenbrookes hospital for a phalanx of tests,including blood,genetic,lumbar puncture,more MRIs etc etc.
I am now on amitriptyline for nerve pain and the dreadful headaches I am getting and baclofen for for spasticity(very tight stiff muscles) and spasms(cramps).
I can't have DMDs or physio or any real treatment until the cause of my symptoms has been found.......

Mouse jerky,normal brain and life as usual.

I know, I know I haven't blogged in ages,still here it is,so make the most of it.
So in reverse order(except my brain bit),Sarah my middling daughter was 25 yesterday,it has been a very difficult year for her,first losing her baby boy then her relationship broke up,let's hope this year is better for her.
Although I am an avowed atheist I have always celebrated christmas as it helps distract from the terrible dark days of midwinter and how down that time of year can leave you,this years plan was that Sarah,Sammy and James and baby Rory would come for lunch and that Becky,Ray ,Poppy and new baby Willow would just visit for a while in the morning and then go home for a little family fun,except as usual plans went awry,Becky and co arrived and Becky was almost asleep,Willow had had her up since 1am..........so being a wonderful mummy I said oh stay for lunch here,we always have plenty.So stay they did,we had the dining table strategically placed so that one person could perch on the arm of the sofa and someone else sat on an upturned bin.
Between the whole herd of us we only drank one bottle of bubbly,two breast feeding mummies,two drivers and me who is wibbly wobbly enough without too much booze,but we had a whale of a time,auntie Sarah had brought Poppy a set of 'musical' instruments,watch the video,musical isn't the word I would use but still it was fun.

 

I finally heard from the hospital on the 11th of this month,they sent me a letter which said

"Dear Mrs That_Woman,

I am writing with the results of your recent MRI head scan.The scan was normal with no evidence of inflammation affecting the brain.I would like to see you again in clinic where we can discuss this further and decide if you need any further investigations.

I hope my letter finds you well

with kind regards

yours sincerely

Dr Useless Neurologist."

I will give her "finds you well" useless ruddy woman.

She doesn't say when I have an appointment or even hint at how long one will take.Although my new favourite GP may have snuck into the pooter system and informed me my appointment will be in bloody June .

I am slowly getting better thanks to previously mentioned super-GP who gave me a course of steroids which seem to have helped.The neurologist though has done absolutely nothing to alleviate my symptoms and only the most basic tests (two MRIs and some electrical tests).No drugs to relieve the spasticity which made me unable to walk unaided more than a few yards at one stage,suffering appalling spasms/cramps,vertigo, pain ridden and temperamental.

I feel a campaign coming on,having chatted to other people with undiagnosed neurological problems it seems patient care doesn't really exist in the field of neurology.Grubby is going to help me draft a 'just what do neurologists do' type letter to hand to her at my next appointment.

I have booked an eye test as I am having some real eye problems at the moment,they may well see something neuro going on too.It has taken me all day to write this as I can only watch the screen for a few minutes at a time.

Now we get to the mouse jerky,don't read this if you are eating.

A few weeks ago I could smell the unmistakeable scent of deceased mouse,I searched high and low while cursing the idiot cat who brings them in and releases them,I couldn't find a body and the smell disappeared,so I naturally assumed the mouse was under the floorboards becoming mummified.Oh no,the cat has been scratching incessantly at the join between landing and bedroom carpets,so I got out the old tape to do a bodge job and what do I find,a dead, very dry, very flat piece of mouse jerky.

The hens have all grown fine new feathery frocks except fanny the wonder hen,but she doesn't deserve a new frock anyway,I couldn't find her at door shutting time the other week so went on a frantic search of the garden,looked under hedges and in nooks and crannies,it was dark when I gave up,somewhat tearfully I must confess,I fell over in the mud straight onto my backside,I heard a cackle,it was only the wonder hen sitting up a tree snickering at me..........

I had my brain-scan on the 24th of last month the good news is they found a brain,the bad news is no results yet,it amazes me just how long it takes to send some data(scan) from one room in the hospital to another and then how long it takes for someone to look at the results let alone tell me what is wrong with me,but hey they haven't killed me off yet.I just hobble and wobble on alternate days,well that is how it feels to me.
I have lost one of my girls to what the local gamekeeper thinks was a marauding mink, another bruised herself very severely trying to get away from it,so she has been living in a cardboard box full of warm comfy straw being spoon-fed delicious luxury maggots.She is now fully recovered and back out with her friends,sleeping in a secure and predator proof greenhouse.
The cat thinks the cold spell is great,he spends all his time catching hypothermic mice and leaving bits of them lying around for me to step on.........
So really this has been a post to say life is much the same as always.

Gratuitous gorgeous grand-kids picture follows.

Been here before.

So we are to have a royal wedding,it will be full of pomp and ceremony ,it will cost a fortune and ensure that they can breed and add to those who get the highest benefits in the land,because I am absolutely certain they won't live off their own incomes.
At the same time we have that Cameron man studying how happy the nation is,what that translates into is, seeing just how much more shit we can take before we become revolting peasants.He recently took business to china and brought back repression.
And peasants we will become,everyone relying on charity because the state will no longer care for the frail,sick and downtrodden,whilst those at the top make more and more profit on the backs of the proles,who thanks to idiot, out of touch judges will no longer be able even to make silly jokes and idle threats no matter how obviously idle they are.

It feels like the eighties,riots,poverty,job losses and royal weddings..........
Anyone remember the trafigura mischief,dumping toxic waste in poverty ridden Ivory Coast,well there is a documentary here,in French with English subtitles,if even a bit of this is true there should be some jail time due someone at trafigura.

In it together?.It will all end in tears.

When politics is getting a bit rough I always make jokes about getting the candles in,it is of course a reference to the three day week when we had power cuts etc which slowly but inexorably led to the winter of discontent.
I currently have a bad feeling and I am stocking up on metaphorical candles again.
The students have set the precedent  for the season and I am seeing calls for street protest cropping up all over the web there are facebook groups calling for runs on banks on a particular date,I won't link to these as I know that a run on a bank would mean a lot of ordinary Jo Publics losing their money because as we all know there is a large difference between real money and bank money,we have absolutely no confidence in politics as evidenced by a piece in the torygraph by that obnoxiously right-wing Peter Oborne,even he calls  parliament "rotten to the core".
We have the disabled and their carers setting up groups for support and lobbying purposes as they become more and more demonised by this government and the right-wing press.
The modern day equivalent of the national front,the EDL are attacking Muslims instead of the Jewish people they went after in the seventies.In the meantime disaffected Muslim youth are turning to extremist groups for a sense of belonging and identity and strangely some Jewish people are turning to the EDL for comfort.
It would seem some members of the conservative party consider street protests may get out of hand again soon too,Steve O'Connell a member of the London Assembly for Croydon and Sutton and a councillor in the London Borough of Croydon and one of the best paid reckons we should ban protests in the capital to save money.
The unemployed are being punished for not having a job by having their meagre poverty line welfare cut after a year of unemployment whilst the numbers of unemployed seem set to rise dramatically.
In the meantime we are again letting the bankers off by cutting the levy on banks' balance sheets.

Of course our students haven't had much rioting practise so aren't too good at it,hence the need for nine papers to have just one photo on their front pages ,the funniest though is that most of them show one rioter and two dozen photographers egging him on.
Then we have the farce that is currently our law,from the twitter joke trial to libel idiocy,no wonder everyone is angry/confused/worried about the future.
On a lighter note,whatever is wrong with me seems to be on the wane at the moment,fingers crossed it doesn't come back,I have my brain-scan due on the 24th so won't know anything until well after that.We are also waiting patiently for the arrival of a new grandchild and sister to our Poppy.
The images above are from here.